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Tag Archives: Jean Ellsweig

When you lose something you love, the idea of time always becomes your excuse. It’s always I’m not ready yet or I’ll get to that another day or I’ll see you some other time. Family members become people you only see at weddings and funerals and lunch with the girl friends pushed back month after month. Forget about that gym membership, it’s a faded memory. You start to convince yourself that if you can just buy yourself more time, somehow what you’re feeling will get better on its own. I think my mom felt much the same way when she found out she had multiple sclerosis (MS). If only she could deal with it another day, maybe it wouldn’t be so bad. I’m not sure when the day was that she finally decided to face her illness. Maybe it was the day she was fitted for her cane, or her crutches or finally her wheelchair. Maybe it never happened at all. For me it happened two years ago today, the day she passed away.

My mom, Jean, was a florist before MS. Her love of flowers is one of the many attributes I adopted from her. We had a massive lilac tree in the back yard and a line of forsythia bushes in the front that seemed to make a bright yellow barricade from the street. There were rose bushes outside the back door and peonies outside the front. In the spring, the catalpa trees would blossom and cover the ground in these tiny white flowers, as if it were snowing. We had a cat that used to eat the supposedly poisonous poinsettia plants in the winter; she lived 18 years. Flowers have become one of the many ways I remember my mom. Twice a year, I have another one tattooed on my arm. While I realize that at some point I will run out of space and/or drive my father insane, I think the finality of knowing that these flowers will always be with me is something special. They defy time.

Reflecting on the past two years, and how I’ve come to work with the MSAA and be involved in the fight against multiple sclerosis is not an easy task. Then again, believing in a cause is not easy either. The biggest part of this entire journey has been the support from my friends and complete strangers. It has been the people I met whose lives inspired me to be better. It was Anna, the woman my age traveling the country snapping photographs of people in the most beautiful way while she monitors her symptoms using the My MS Manager app for her iPhone. It was Joe, who reached out to me through a friend to tell me about his own mom and her unbelievable struggle. It was Amanda and Neal, who continue to support me with their confidence and their dedication to the MSAA where they work. It was Shawn, who hiked 814 miles to tell the world that she wasn’t going to let her MS bring her down. These people deserve a standing ovation in my heart. I applaud them and I thank them for being a part of my life.

I’m not even close to done yet. I’m starting the planning for another Move On, MS event as I write these words. That will happen and it will be great. I do think it’s important to take time and reflect, to be sad when you need to be, or to take a break. It’s hard to describe the impact that losing my mom to MS has made on my life over the past two years. It made me broken. It made me sad, angry and alone. Then it made me strong. It made me open up, talk to people, make new friends, be unafraid. It made me stop putting things off, make plans to see family, take the afternoon off to have bloody mary’s with my friends. It made me dedicated, wiser and calmer. It has given me a purpose. It has made me a proud Ambassador to the Multiple Sclerosis Association of America. A place in which I think I would like to stay.